Q&A: What’s at stake for patients in the European elections?

This month’s European Parliament elections, the biggest voting contest in Europe, will chart the EU’s course for the next five years and beyond.

The European Patients Forum (EPF), an umbrella organisation that works with patients’ groups throughout Europe to ensure their voice is heard at an EU level, is campaigning to make health a central issue in the elections, to drive better health across Europe.

Promoting patients’ rights and enabling patients to articulate their views matters on many levels, but is perhaps best exemplified by the fact that within Europe there are significant variations in outcomes for patients, both within and between countries, that are not always related to the level of activity – for which read spending – on healthcare. Understanding the reasons for these differences, and helping address them at a European level, will improve equity, and help ensure our healthcare systems are sustainable.

In April Science|Business spoke to Nicola Bedlington, the forum’s secretary-general who stepped down last week, to find out how the next wave of MEPs can prioritise patients in the coming legislative term and how health policy should be shaped in Brussels.

As the election approaches, what are the main health issues you feel should be on candidates’ minds?

We’re calling on political leaders of the EU, Parliamentary candidates and the future Commission, to take action and ensure health is an EU policy priority. We’ve structured our campaign around five key areas. These are: patients’ access to the healthcare they need with no discrimination; patient empowerment, to be supported by new, comprehensive and up-to-date legislation on patients’ rights; for Europe’s future digital health tools and systems to be patient-driven; patients to be involved as equal and fully-resourced partners in driving better research; and patient organisations’  involvement in decision-making, both at EU and national level.  

We put a lot of focus on meaningful engagement for patients, and patient empowerment. It’s a core pillar for quality in sustainable health systems of the future.

We have had a strong presence in Strasbourg, as the electioneering gets underway. I think more can be achieved in the next few weeks. The proof of the pudding, ultimately, will be how many MEPs come into power with a real commitment to the patient’s perspective.

How can Brussels help improve health in Europe? What are your hopes for the 2019-2024 term?

One of the prerequisites we have for the next term is an appropriate construct for health in the European Commission. We’re really keen to see a robust way of dealing with health, with the right level of political buy-in. We were the first to call for a Commission vice president for health, a request that many others have taken up since. What’s very important is that there’s a clear home for health, alongside a commitment to health in all other relevant policy fields. Both are needed – otherwise health will be scattered everywhere, but focused on nowhere.

What’s exciting for us is a new vision of public private partnerships on health within the research programme, Horizon Europe, that will go beyond a focus on medicines development, and take in the whole spectrum of care, including digital advance. We expect patient involvement in the governance of any new health partnerships from the very beginning. We would also want to see patients’ strategic involvement in any mission in the field of health.

It’s important for us to see the Commission continue to work towards the UN Sustainable Development Goals. Our view, however, is that all goals will be compromised if we do not get it right on goal three, the goal on health. By 2024, we’ll be almost halfway through the journey towards the Sustainable Development Agenda 2030, and it would be important to see significant progress, particularly in areas such as Universal Health Coverage, which is still far from reality in some member states.

There have been positive signals for the future. The new Commission programme for health is now going to be included in a wider framework, “the European Social Fund Plus”, which we broadly back.

Finally, I would stress the importance of health objectives in EU cohesion policy. We’ve been working hard with the relevant agencies and structures to promote this. For us, through the lens of patients, it’s about providing pragmatic support to member states, to buttress national health plans.

How do you rate the recent record of the EU in providing for patients?

We’ve made a lot of progress over the years – both in hard legislation and soft policy – and EPF has tried to help influence the agenda. You look at pharmacovigilance legislation, for example, which gives patients the opportunity to report directly on suspected adverse reactions to medicines authorised in the EU. Then there’s the clinical trials legislation, which strengthens informed consent and transparency – even when clinical trials fail, for example, these results have to be made public.

In softer policy areas, we have been collaborating on increased patient safety and e-health, areas that aren’t always so consistently dealt with at national level.

We’ve been able to drive patient engagement in the EU’s Innovative Medicines Initiative (IMI). With EFPIA (European Federation of Pharmaceutical Industries and Associations), we co-lead the IMI-funded project Paradigm which, among other things, is developing new patient engagement metrics, with a view to setting out a sustainability roadmap to optimise patient engagement across medicines R&D.

What’s welcome for us is the really serious approach to patient involvement we’re seeing within IMI. There has been a real effort to involve patients right from the very beginning.

A 2017 paper published by the Commission questioned the value of EU involvement in public health. Are you concerned about that?

We have to note the so-called Juncker scenarios for the future of the EU didn’t bode particularly well for health. We’ve worked very hard with policymakers to ensure that they understand how important continued EU health policy is. It’s such a primary concern for patients and indeed citizens.

Some argue EU health policy would be better if the portfolio wasn’t split between so many different EU directorates, while others say it is important to have a ‘health in all policies’ approach. What is EPF’s view?

We think it’s good, actually, that there’s a health component throughout the various EU policies. But you do need to keep this home for health – DG Sante – that can coordinate everything, and ensure there’s optimal support for all the directorates that work on health. There’s lots more opportunity there to coordinate and make sure that the Commission really delivers on an ambitious agenda for health, defined by the member states and the health community.

How do you assess the EU’s role in digital health? Do you see benefits for patients, or the risk that new digital tools will be an added complication in their lives and their privacy undermined?

We welcome the whole digital health revolution. Patients want healthcare systems that address the outcomes that matter to them; systematic collection and use of data such as patient-prioritised clinical and quality of life outcomes will be of vital importance. If it’s properly managed, it can deliver a lot.

We have to be careful, obviously, that we don’t push new technology for the sake of it. Also, there is a small fear the digital health agenda will compromise human interactions, which we wouldn’t like to see. It’s all about enhancement, creating more time, greater quality and effectiveness.

Generally, patients are altruistic about sharing their data; they see the benefits of new technologies for their peers and future generations. What patients don’t want to see is a cavalier approach to data: it needs to be handled with great care and data security and data quality are fundamental.

What’s next for the European Patients Forum?

One of the things we have managed to do well is represent patients with chronic conditions. Slowly but surely, we’re moving into more public health issues, such as vaccines and nutrition. We all need to reflect on a perceived dichotomy between prevention and patient centred chronic patient management. It’s in fact one continuum. It needs to have a collective, collegial approach.

You have stepped down as secretary general after 13 years. What does the future hold for you?

I chose to step down as I believe organisations need new leadership and fresh blood. I leave my current role with EPF in great shape, both politically and financially after a couple of quite challenging years. I leave also as we enter a new era and new mandate, so the timing is perfect to pass on the baton.

My priority now is to help the transition to our new executive director, Usman Khan, who has joined us from the European Health Management Association. So I’ll be working closely with him, and I will continue to play an advisory role in EPF, whilst embarking on a few new projects in the health field.